Republished with permission from Kimberly Tissot of Able South Carolina.

Note: This is from a couple of years ago but the event still has value as a teaching moment.

I’ve had a hell of a week and I need kindness. I found IL to be my home 10 years ago and I’m incredibly proud of the work of Able SC and especially our team. While we are no strangers to non-disabled folks getting upset with us, I have never felt more betrayed by my own community than I have this week.

Spiral notebook with Know Your Enemy written on the cover, and a pen beside it.

After learning that members from our own community talked about organizing a protest on our CIL because of our presence on a national person-centered planning committee, I think we all need to wake up to reflect and remember we are in this fight together and we must communicate with each other better. Our organization, as well as three other IL orgs, are serving on a committee because we wanted to ensure disability representation with an organization that typically overlooks us. This shouldn’t be a problem, but for some reason, it was to this group. I think all three IL members are all pushing for more representation as well, something that could have been learned if this group simply reached out to us. In short, let’s communicate more and learn and grow together. If we don’t understand something, we need to research and learn. We are in this fight together and we need to look out for each other. Especially in these times.

In closing, my assistant director sent the below email to our staff to provide a reflection of the situation. It has been a learning experience for all 53 of us at Able SC and I wanted to share with you all.

Able SC Staff, I wanted to email you all about some recent
events. Everything is under control now, but I thought it was a good teaching
moment about different advocacy approaches. Warning: it’s a long email.

A couple of months ago, ACL sent out a call for nominations to
serve on a national person-centered planning (PCP) policy and practice
committee. PCP is a required practice for all Medicaid Home and Community Based
Services, and in most cases is not implemented properly. PCP is
consumer-centered, but not always consumer-driven. It’s a step closer to IL,
but not quite there, even when implemented correctly. However, since our mantra
and the mantra of the disability community is “nothing about us without us,”
Dori put her name in the hat and was chosen to serve on this committee to
influence policy. Dori has been trained on PCP, has done trainings for others
on PCP and pushes a more consumer driven model, and has served on our own
state’s PCP committee with some other members of our staff so she was well
qualified in addition to her personal experience.

Now comes the controversy. First, the Autistic Self Advocacy
Network submitted public comments on the lack of representation of individuals
with disabilities on the panel. Many folks from the IL community jumped on in
agreement (including us), until several members of the committee chimed in and
stated they did have I/DD, including our very own Dori. And these weren’t just
token members as we sometimes see; they were high ranking members within their
prospective organizations. So then the community turned to wanting to boycott
and protest the committee because of the topic itself. Next, someone who used
to be a partner with us here in SC who is on lots of listservs chimed in and
said, “Let’s start with Able SC….the self-described CIL in Columbia which
employs Dori Tempio and has allowed her to be on this panel…” And then
without even reaching out to us, several of our sister CILs in other states
jumped right on board with the outrage. Luckily, Kimberly has established some
great relationships and several people reached out to let us in on what was
happening and also pushed back on some of the criticism. Kimberly also had
direct conversations with some of the naysayers to explain our position. It
seems to have died down for now.

Some reflection from this drama:

  1. Advocacy needs to be well-informed and well-researched. No one bothered to contact Dori to find out why she, as a person with a disability, felt compelled to serve on the committee.
  2. Strategy matters. PCP exists, it’s progress from where we were, and it doesn’t look like it’s going anywhere any time soon. We have taken the approach of being right up in the middle of discussion so we can insert the IL philosophy into it every chance we have. Some organizations would rather use their energies to protest. I know protesting can be an effective form of advocacy; disability rights history has some great examples of this. But protesting is typically a last resort when discussions have broken down, progress has stalled, and leadership is shutting the oppressed population out of the process. Those circumstances don’t apply here, at least not at this time. Are there people on the committee who believe in the medical model and think people with disabilities can’t be independent? You bet. But guess who will be there to put them in their place when they speak nonsense? That’s right—Dori Tempio!
  3. Don’t alienate your allies. Why would our IL partners want to focus on fighting with us instead of trying to reach out to us to find common ground and pool our collective power? There are so many battles left for the disability community to fight; why go to war with each other?

In summary, I thought this real-life scenario was an excellent
example of different advocacy approaches and gets to the heart of who we try to
be as an organization. We make non-traditional allies, we are at the table with
decision makers, we are educating, and we ARE a way that has
worked for us time and time again. Thanks to each of you, as I know you are all
working on a regular basis with folks who disagree with you, and you are moving
the needle slowly but surely in a way that gathers the confidence and respect
of others and brings on partners instead of alienating them. You all rock!

Who is the enemy?

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